Understanding the meaning of "meal" vs "snack"

Meal or snack time with Alexander has been stressful for a long time, but lately I realized I'd gotten a bit "lazy", and gotten in to the habit of bargaining with him about mealtime.  Basically Alexander is a picky eater, who doesn't like to try new foods.  His understanding of what a "meal" meant vs what a "snack" is, was basically non-existent.  With his big weight lossover the last several months, I've given in more when it comes to food, and in doing that I've created even more stress around eating.  It often feels like I am banging my head against that brick wall, and it makes me want to just give in to avoid the frustration.

 As with many things, I didn't quite know that he truly didn't understand - because it's such a very basic concept that "all kids" understand.  Then on Saturday, after arguing for the 3rd time that a bagel with butter was NOT a snack, nor was it an appropriate dinner, I had a light bulb moment.  I realized that he didn't know what these things meant at all, and that so much of my frustration with him was completely uncalled for.

Once again, I forgot that the part of his brain that processes what someone says with words to an understanding of what is said, is basically not functioning.  I so often find myself thinking he understands basic things that he just doesn't, and you'd think that by now, I'd stop making the same mistake again and again.

So I sat down at my computer and googled dozens of pictures of different foods.  I then found a picture of a plate, and used Photoshop to divide it in four (Carbs, Protein, Fruits/Veggies and Drinks and Dairy).  I know this is not  a perfect rendition of how much kids should eat of what, but my main idea was to show him that a  lunch and dinner generally should have a bit of all 4.  I then made sheets with pictures from each group, as well as a snack sheet and a "treat" sheet.  I also made a schedule of his day as far as eating goes.

 

 

I then bound them together and sat down with him to look through it.  I explained how a meal was like the plate, and that a snack is picked from the snack sheet.  Each sheet has a "not too much" section, to show him that some things, while they belong on the sheet, are not good to eat every day.  We read the book, and he went back to play.

2 hours later he told me he wanted a snack.  Bracing myself, I waited for him to ask for some kind of carb (bagel, toast or cereal), but in stead (with NO prompting) he said "Let me check my picture".  He found the snack page and studied it like a menu, and then went on to pick veggies and cheese!!!!!  He never even questioned why there wasn't any bread on the list, but rather accepted that snacks are what is found on this sheet.  This will mean hours of less arguing each week.


Now I am about to sit down and make a "social story" about what we do when we're in a rush - something else he doesn't grasp - and his aide at school is putting together pictures of different kinds of body language to help him interpret social situations appropriately.

I am definitely still getting used to knowing that it takes a visual aide for him to truly understand something - but I think we are lucky that we have this little insight in to how his brain works, and a way to facilitate understanding and growth.

Letting go of things we never did

A couple of days ago, when Alexander and I drove home from school, I told him about something silly that happened in my childhood.  I don't exactly remember what it was I told him, but what warmed my heart and excited me, was that he was paying attention and understanding what I was saying.  It's hard to explain - but although Alexander understands the meaning of a lot of words, it is still hard for him to get meaning from words that are put together to tell a story.  So the fact that he was listening, smiling, and waiting for the punchline made me think that just maybe he would be ready for me to read non-picture books for him.

I knew Harry Potter (although it's an amazing series) would be too difficult to understand, but I thought maybe the first book from Little House on the Prairie would be simple enough.  I also figured since it has stories about kids, animals, scary wolves and such, that he might find it interesting.

So off to the Kindle store I went, and I got the first book of the series.  At bedtime we cuddled up, and got ready to read.  I read the first page, and quickly found I had to "translate" it into smaller concepts that he might grasp.  By the 3rd and 4th page, there was no question that he was not able to follow along with the story, but I finished the chapter - having a hard time giving up hope that it would work.  We had a cuddle after this, and he asked if next time we could read a book with pictures in it.

Although not disappointed in Alexander at all, for some reason it was very hard for me to let go of this.  I love reading, and as a mom I have always looked forward to when I could read kids novels for Alexander.  At this rate, by the time he can understand the story, he'll be able to read it by himself.

Today I have new resolve to "get over myself", and I'm trying to let it go.  I will try again when he's 8 1/2, and when he is 9 if needed.  I still do selfishly hope that some day we can read kids books like Harry Potter or any Roald Dahl book together, but for now, we will continue to enjoy the crazy world of Robert Munsch,  all the creatures in "The Napping House", and empathize with friendly sharks who scare away would-be friends.

Overwhelmingly impressed!

Alexander went to his first "Motor Group" physio-therapy today.  It is group physio for kids with motor disorders, as well as developmental delays and behavior issues.  I had assumed that since it was "group" in stead of 1:1, that it wouldn't be as good as just going to a physio therapist.  Boy was I wrong!!

I can't stop smiling!

For the first time since I can remember, I was completely at ease with Alexander in a group activity/sport.  Usually I worry about him not understanding, worry about he kids teasing him, and I worry about him worrying about not being "up to par.  Yes, I am very good at worrying.

Well today was different.  It was a group of 6 children, some like him, and a few with higher challenges both mentally and physically, and all in his own age-group and size. They started the hour with each child introducing themselves, and for the first time Alexander didn't stick out.  It made me tear up, but in a good way.

I had expected that there would be the physio-therapist and 1-2 aides.  In stead there was a physio therapist, a sport skill instructor, 2 kinesiologists, a PT assistant and 2 kinesiology students.  Yes, that's correct.  8 adults and 6 kids!!  That's more than 1:1 isn't it?  In later sessions there will also be an occupational  therapist yoga instructor, and a physio therapist ski instructor! I am blown away.

The environment was one full of positivity and "high fives", while encouraging the kids and cheering them on.

The first half hour was spent cycling through stations, working with all the different professionals doing things like weights, balancing, playing basket ball, jumping, and playing soccer.  All of it was done 1:1 with one therapist per child.  Then the second half hour was spent rollerblading!!  They had roller blades and pads for all the kids, and they taught them how to get up and how to fall, then how to roller-blade.  Alexander and another girl caught on fairly fast, and got to go roller blade in the hallway with their respective therapists.  Alexander was VERY proud of doing 7 laps, and he told me he is a star!

In the coming weeks they are doing cross country skiing, lacrosse, inside hockey, curling, yoga, bowling and rock climbing.

The most important part of today though - Alexander was beaming the whole time.  He looked so happy and proud the whole time, and his attitude about skiing next week has already changed from "I can't" to "I can".

Tools of the Trade

After a couple of years of trying to understand what's going on with Alexander, we are finally at the point where we are making some pretty big and helpful changes for him to function better both at school and at home. I want to write about what has worked for us, hoping that it might also help someone else.  This post might be more interesting for other special needs parents, than my family and friends, but feel free to read on :)

Visual Supports

Although Alexander understands and knows many words, he usually has a hard time understanding the concept of what is being explained to him.  Since his verbal reasoning is so low, we have started using more visual cues, and it is amazing how well they work.  I'd never have guessed something so basic would be so effective!

Here are the visual cues we use now (and some we will be getting from clinic next week):

• Morning and Bedtime schedules - these have worked very well.  He has a set place where he can check his schedule to see what he has to do next, and gets the feeling of accomplishment to finish all the tasks on the list.  We are also getting a visual schedule that I'll hot glue on the inside of his lunch bag to remind him to eat.  Alexander has lost 5kg in a couple of months due to decreased appetite as a side effect of one of his meds, and usually goes to school for 8 hours on nothing to drink and 2 small crackers.

• Weekly Visual Calendar - we are getting this next week, but it is essentially a bigger version of the bedtime routine, with each day of one week, showing him things like "school", "home", "Grandma's", "Gymnastics", "Physio", "playground" etc.  This will hopefully help him understand how the week works, and show him that he does have time to play at home (his absolute favorite thing to do).

• Cards - they are making cards that say "Oh No! Oh Well" to keep at school and at home, to help remind him that he can let things go when plans change.  He is very literal, and often gets very anxious and upset when things don't go the way he thinks they should.  We have had some success role-playing this with him, and I think the visual cue cards can only help.  When he remembers that he should let something go (for example not get very upset if someone did not log off the computer), he now starts over his reaction, and says "oh no, daddy didn't log off!!!" then looks at me and says "oh well", and proceeds to log off himself.  In the past, this would be a 15 minute rant, and frustration all around. All of the cards (except the grandma one) will be used at school and at home. We are getting the following cards:
• "Oh No! Oh well"
• "No Big Deal"
• Picture of Alexander NOT calling mommy while at Grandma's house (big frustration, ruining visits)
• "no" signs that are see-through, and can be placed over other things.
• White Board/Chalk Board Stickers (!!!!!).  The OT gave me a few stickers from Staples - meant to use as labels etc, but they are so incredibly useful for any kid at school or home!  We put it on Alexander's desk, and so, when plans change, or he needs an extra cue or hint, there's essentially a white-board on his desk.  His teacher loved it, and I think she is going to Staples to get it for all the kids!

Occupational Therapy Supports:

• Weighted Pencil - Alexander has a very weak grip, and generalized hypotonia (weak muscles), and with a weak grip comes awkwardly holding his pencil, and disorganized printing.  His OT had him try multiple different writing tools, but the one that he liked best, and wrote better with, was his weighted pencil.  It's cheap to make, and has helped his legibility a lot.

• Slant-board/Slanted desk: Due to his hypotonia and left handed-ness, Alexander is "hooking" when he writes.  From what I understand, this means he excessively bends his wrist (thumb hooked toward arm), which causes pain, and - again - awkward, not legible printing.  To fix this, we have started using a slant board at school.  All it is, is a thick binder or two on top of the desk when writing - which keeps him from being able to hook his hand.  When he tested it, he liked it better with the slanted board, and I could see that the hooking completely went away.

• Left-hander friendly worksheets - Also to reduce "hooking.  Kids/people who are left handed often ends up bending their wrist like this, to be able to see what they just wrote, or to see the question or math problem they are answering.  His teacher will make sure he has work sheets with questions on the top or right side, with room to answer on the bottom or the left side.

Gross Motor Help:

• Special Helper - every morning, in stead of running around outside, Alexander gets to go inside and help his teacher, which he loves.  This means that every morning he starts his day by lifting all 22 chairs off the desks, and thereby working on his core muscles.  His principal even suggested he should get a "chair monitor" badge ;)

• In the mornings, he goes inside early - partly to be a "special helper", and also to be able to get his outside clothes off, inside shoes on before the crowding that happens when 22 kids are getting backpacks, snow-pants, coats and boots off.

• Extra space - In stead of moving Alexanders hook, because he needs extra space to get dressed, his teacher moved a bunch of kids hooks around.  They don't know it was because Alexander needed space, because a lot of kids were moved. <3

• Physio Group - this week Alexander starts physio with 4-5 other kids like him.  They will all be having fun, working on building muscle strength, balance and coordination.  They are doing things like cross country skiing, rock climbing, and even practice riding bikes (something Alexander still is not able to do at almost 8 years old).

Ipad Apps

Alexander likes technology as much as most other kids his age.  He has an ipad because it has many helpful apps to help him (and me) out - but of course he loves Angry Birds, Cut the Rope and  Tank Heroes the most ;)

Choiceworks ($4.99)

This app is amazing and very easy to use, and there's 3 parts to the app. It has a "schedule board", a "waiting board" and a "feeling board".  We use it for his school-day - showing him what activities are happening each day, and in what order.  When an activity is done, he simply drags it across.  It is keeping him from interrupting his class, asking his teacher over and over for certain parts of the day.  This app can also be used for time outs or times they have to wait or be quiet, or for small social stories about feelings, explaining what the child can do when they feel frustrated or sad etc. In addition to using the library of images, you can upload your own.

 First Then Visual Schedule ($9.99 - also available for Android)

This is another visual schedule app.  It allows you to make a schedule for your child, then chose if they see only one action/part of the schedule at a time (then swipe for the next part), or two (First I do x then I do y), or a longer list with the full schedule and all the steps.  It can be used to make some very good schedules - especially for kids who want to see pictures of themselves doing all the steps.  This app does not have a big library of images, but comes with the option to take pictures with your ipad/phone while making the schedule.

Stop Go Timer (free)

This is a timer that looks like a traffic light.  One of Alexander's obsessions used to be traffic lights, so he  loves it.  You set the time, then you chose if the light remains red, then turns to green, or the opposite.

Dexteria ($3.99)

This is a fine motor development app to work on fine motor manipulation (pinching to pick up crabs), finger sequencing and isolation (using fingers to tap colored areas), and to improve finger control by writing letters and staying within the lines.

Sight Words (free)

The name says it all.  This is an app with flashcards to practice sight words.  You can use the decks provided or make your own.  I got the list of the sightwords from pre-K to grade 3, and made them into a deck.  Whenever we have 5 minutes, we cuddle up, and practice reading words. There is also an option to record you reading the words as well.

Flash Cards: ($3.99)

I love this app, and it is so worth the $4!  It is an app that allows you to make your own flash cards.  The cool thing though, is that your flash card can have up to 4 or 5 sides or pictures and text!  We have used them to write facts about things Alexander is interested in, and added pictures and maps.  

Example: One of our decks is "River Fish" (one of his interests).  So the first card has a picture of a fish, with its name written below it.  You could also chose to write the name on the next side, so they could first see the picture, then the word.  

So for us the River Fish deck goes like this: (-> means swipe) 

Picture of a Nile Perch, and the word Nile Perch -> Picture of a map of Africa and text: The Nile Perch lives in Africa. -> picture of map of Africa with the Nile on it and text: The river Nile is in Africa. -> Another picture of the Nile Perch with the text being facts about what it eats and how big it gets.

Next Card: Picture of a hippo, text: The Hippo also lives in the Nile, followed by sides of the card with facts about the hippopotamus.

Next card: Nile Crocodile with pictures and facts.

You could also use this for sight words, or possibly even for visual schedules.  I think it could be useful for taking pictures of your kids, and writing small stories about them (to practice reading).  This app will keep track of what you got wrong or right (swipe down for wrong, and up for right), and will test the ones you got wrong more often (useful for sight words).

Make Sentences (free)

This app has pre-written words that the child has to sort into sentences.  A voice will say the sentence, and the child has to remember it, and put the words in the right place.  They use sets of words that are similar, increasing the length/complexity of the sentence:  "this is a home", "this is my home" and "is this a home?".  His teacher really liked this one.

Ant Smasher (free, also available on Android)

Although this is more of a "game", I think it's probably good for hand-eye coordination.  The kid has to smash ants, but make sure to not touch the bees, and the levels get increasingly difficult.  Alexander loves this one!

I am sure there are many more apps, but these are the ones we use the most.

Well these are some of the things we are currently doing with Alexander that have been helpful.  I am always on the lookout for new and better ideas, but this is where we are at now :)

Silver Lining

OK, I've been complaining enough about how tired I am and how difficult things get (for now, anyways).  At the end of the day, as much as things take a lot of work, and a fair amount of banging my head against a solid brick wall, I get to spend every day with the most interesting and loving boy on the planet. OK, I might be biased, but he's a keeper, for sure!

Here are just a few of the things I'd miss if he wasn't exactly the way he is:

He will not go to bed without a hug, kiss, nose kiss, pet and rub.  So I have to hug and kiss him, then rub our noses together and rub, then pet his head.  The last two is because about 80% of the time when he goes to bed, he pretends to be some kind of animal.  Lately a snake named Viper. He insists on being wrapped as tight as possible, and makes sure he has a tail hanging off the bed.

Viper the snake, ready to go to sleep.

He doesn't lie!  Not because he is perfectly behaved, but because in a world where he adheres to rules, lying is not an obvious option for him.  So when I try to get him to make a promise, he will not make it if he isn't sure he can do it.

He lives the way most of us wouldn't dare to.  He doesn't worry about how he "looks", so he'll pretend to be something from a movie or game, even if people can see him, he'll go pick his dad up at work in December - dressed as a devil, and he will play in the park, wearing a Star Wars mask.

Going to the playground!

He gets so excited about unexpected things!  Like when I took him to the petting zoo, expecting him to love the baby goats - in stead all he wanted to do was be in the chicken coop!  One day, driving through the Rockies, we found a small stream next to the road - and Alexander was thrilled beyond belief, because he got to "touch a waterfall"!

The magic of touching a waterfall!

When he wants to spend a day at home (that's how he unwinds), he is honest about needing it, but expresses it as "Mommy I just love you too much, and I want to be with you today".  Melts my heart!

Even when he was stuck at home in a cast and a wheelchair, he didn't complain about it, but quietly asked if he could still pretend to be a bad guy.  I told him "of course", and he got his bucket of swords and played on, like nothing had changed at all.

"bag guy" with wheels ;)

His boundless curiosity and imagination.  We have spent hours talking about "baby chickies",  difficult levels in computer games, black holes,  tentacles, meteors, squids (or, as he calls them "squibs"), and lately it's all about Nile Perch (yep, that's a fish living in the Nile), Stingrays and other dangerous river fish all across the planet. We learn together, and because of Alexander, I now know about so many things I'd never have thought to look up or learn more about.

The more you learn, the more you'll grow!

Teasing, bullying and fitting in

I feel that some of my early posts may have been negative or "ranty", but I think that might be because it's just been a rough little while.  I promise more positive posts in the future - just not today ;)

Ever since I knew Alexander was "different", I worried about the day that he'd realize it, and potentially feel bad about it.  Until he was 6, even if kids on the playground were calling him names, or telling him they didn't want to play with him, Alexander never understood it, and so was not hurt by it.  My heart broke every single time of course, and I feel teary just writing about it.  I've had to tell Alexander so many times that he does not want to play with "them" because they are not being kind, but he would just try to get out of my arms to run over to them and ask to play, and be upset with me for not letting him play.  This would often lead to me taking him to a different playground - hopefully one with only toddlers on it.

Well, since he started 2nd grade, he has started to realize some things.  He now notices when kids don't want to play with him, but still does not have the skills to deal with it properly.

This fall at school, his teacher and I spent weeks trying to figure out how to handle it, and what to do.  He was bullied a few times in recess, and this mama bear immediately contacted the principal, his teacher, and had emails and meetings about it.  I just couldn't send him to an environment where he'd be hurt, and not able to defend himself.  The school reacted very appropriately, and the kids had to talk with the principal, and they made school wide changes to recess supervision, and his teacher kept a close eye on where Alexander was playing.

How do I get his classmates to be understanding?  They are only 7 and 8 years old themselves, and with their limited perspective, they probably find Alexander fairly annoying.  Did I just call my own child annoying? Yes, I sure did.   He has a big heart, and not a mean bone in his body, but his complete and utter lack of understanding what's socially appropriate, combined with poor language skills and the maturity of a 3 year old makes him do incredibly frustrating things.

Examples:

He ALWAYS ALWAYS tells on ALL other kids.  No matter how minor or unimportant - as soon as any kid breaks any rule, he'll burst it out loud to tell the teacher: "Mrs C!! Kate is tapping her pencil!!" "Mrs.C, Ricky isn't crossing his legs!", "Mrs. C, Cora is eating her snack".    This will not make him many friends!  Day after day, and week after week, I, his teacher, or both of us together would talk with him about taking care of himself, and not minding everyone else.  Every time he'd listen, and every time he'd do it again.

Also, in recess, when the kids are being nice to him - often he doesn't understand the rules of the game they are playing, and then - in stead of trying to work it out - he goes directly to the supervisor to tell him/her that the kids are being mean to him.  Then his teacher gets involved, and tries to get to the root of it, and it turns out the only problem was Alexander not understanding, and no amount of explaining would convince him of this - so now he's the kid who tells on them in class, and runs to the supervisor in recess.

Considering all this, Alexander has not been teased or bullied since the fall.  Until today.

He came home telling me he'd had a horrible day, and when I asked why, he told me kids were calling him names in recess.  Many questions later, I figure out that he'd been playing tag in recess, but when he was "it", he wasn't able to run fast enough to tag the other kids, and he kept tripping and crashing into things (due to his dyspraxia), so the kids all started pointing, laughing and calling him names.  He told me they "emptied his bucket" and that it made him cry. Bucket fillers is a book/program teaching kids how to build eachother up (fill their bucket), rather than tear eachother down (emptying their buckets).  For some reason, this was the one time he didn't think of contacting the recess supervisor, and so it remained unresolved.  I will go have a chat with his teacher about it tomorrow, and we will find a way to deal with it.

How do I keep him from being bullied or teased?  How do I keep his self esteem high while he is noticing his differences?  How can I teach him proper friendship skills?  Bleh!  It's days like today that I wish I could just keep him home and not have to force him to face a sometimes cruel world!

To sleep or not to sleep

Sleeping - or rather, NOT sleeping has been something Alexander's had problems with since he was about 1.5 years old.  We've tried doing a proper schedule/routine, exercise, and all that.  I've read books about "child sleep hygiene", and come to accept that although the information was good, no amount of routines will put Alexander to sleep.  I know many kids like Alexander suffer from sleep problems, and I am sure it doesn't help that insomnia seems to be in my family.  I have insomnia, and my brother and mom suffer from it too.

By this fall, when surgery had cured his sleep-apnea, but not his insomnia, I had given up on really trying, since all it did was stress me out, which would make me snap at Alexander when it was midnight and he was still awake.  Our new rule was to try for "good bedtimes", even if they might not include any actual sleep.  I would give Alexander a sticker for a good bedtime if he did not argue when it was time for bed, and if he quietly tried to sleep, even if it might not work.    I often sat in the room with him to help him relax and wind down.  

I realized he did not understand what relax meant, when I told him to relax for 20 minutes, and he kept asking me to start over because he'd accidentally taken a breath or scratched something or moved. Now, try to imagine the fun in trying to explain what "relaxing" actually means to someone with a somewhat limited understanding of language and a highly limited understanding of what I tend to call "concepts".   After weeks of failing at "relaxing", I finally managed to show him what it meant by cuddling and rocking him, while telling him what to think about.  So now, what he does is he goes to bed and "thinks", which is the closest we can get to proper relaxation. I love hearing about his great plans, including how when he is 20 years old, in the afternoon, his dad and he will go downtown and find a beautiful girl for him to marry.  When I asked why I couldn't come, I was told that the beautiful girl might think he was already married.  My job while they go downtown will be to buy a house with a room for him to make cages for snakes.  I love his little mind!!

In October of this year, one of the things that came out of the neuropsychology rapport was that he had a severe delay in development of executive functions, and ADHD.  So after talking with his pediatrician, we decided to start medication to see if it would make a difference in school.  Alexander's first day on medications was the very first time in his 7.5 year life that he had a proper conversation with his dad.  We were baffled!  He was actually chattier on the medication, and less upset in school, so everyone who knows the "before" and "after" Alexander agree that he must have that medication.  Since ADHD meds are stimulants, they often affect sleep negatively.  On his new meds, Alexander could not fall asleep before 3am, so very soon after, we started giving him Clonidine for sleep, which is also fairly common in the treatment of ADHD.

Within weeks of starting the medication, his teacher, myself and his resource teacher at school all noticed that he was becoming what we called "OCD-ish".  We are not sure if it was some reaction to the drug, or if maybe now that he could think more clearly - if it was something that might have been there all along.   After another meeting with his doctor, since sleep was still an issue, she increased the Clonidine to help him sleep, and also because it might work to decrease his OCD behavior.  That was right before Christmas.  On Boxing day as I was putting him to bed I noticed him staring at the ceiling.  He told me there were spiders there, so I turned on the light to show him there were none, and left the room.  A little while later he called me in, and I could see he was frightened.  It turns out he was seeing spiders all over the ceiling (hallucinating), and even at times brushing them off himself.  Since he is so "young" and has a trusting relationship with me, he believed me when I told him that his mind was playing a trick on him, and that it was almost like a spider TV show inside his head.  By 5am, I called Health Links, and they told us he had to go to the hospital for an assessment immediately. Long story short, they think it was all from the Clonidine. After sleeping only every other night since then, this week he started a new, more heavy hitting medication called Trazodone.  I am feeling cautiously optimistic that maybe he'll get more rest, and that it might help his development both at school and at home.


Hopefully, with sleep "taken care of", we can move on and work toward bigger and better things! :)

He's just like Sheldon

I can not find the words to express how much frustration I feel when someone who spends almost no time with my son, has an opinion about why he has to do therapy, take meds, and why he generally doesn't act like most 7 year old boys.  And don't get me wrong - I love Sheldon in the Big Bang Theory, but what's so funny on TV might not be as hilarious in real life.  We definitely see Alexander in Sheldon when it comes to following very specific rules socially, because he has no understanding of how to act, but the comparison ends there.

Here are some explanations I've been told to explain why Alexander has (or sometimes in their "opinion" hasn't)  epilepsy, developmental delays, sleep issues, behavior issues, speech therapy, OT, PT and even "explanations" for why he developed pubic hairs and other signs of puberty at the age of 5.  I should probably take the hint and not try to explain what he is going through to people, because they will never understand.

"he's fine"

"It's probably an allergy" (as in why he seemed to physically enter puberty at 5... and this was from a family member)

"he's an only child, we just have to pretend to be his siblings" (his adult siblings??)

"he's just like Sheldon" (!)

"he's normal" (whatever that means)

"he's just a quiet guy" (i.e. saying he was choosing not to talk)

"he's just clumsy" (disagreeing with his medical diagnosis of dyspraxia)

"he's just clumsy" (explanation of what turned out to be seizures)

"he just plays too much computer games (he doesn't, but when a computer game is his "thing", he does all his toy/imaginary play recreating it.  He did the same with car washes, buses and traffic lights, but that was "cute" because it wasn't a computer game)

"he's just a big teddy bear" (he is, but that is NOT the reason he wants to play with kids who are teasing him)

"stop worrying, he'll grow out of it"  ("it"??)

"he'll catch up" (how does one "catch up" half a lifetime of development without help?)

"he's just lazy" (why he tires easily - turns out his muscles are hypotonic)


I could go on and on.  What they never seem to understand that I do not WANT him to be different, or to have challenges - but he is different and has them all the same!  Pretending he doesn't would be a huge disservice!   I wish I could show these people how wrong they are. I know that their opinion about something they know nothing about shouldn't bother me so, but it always gets to me.

They don't have a binder full of reports, describing all their child's "deficits".

They get to sleep at night and maybe even chat with their husbands in the evenings.

They don't spend so much money paying for Children's hospital parking that it actually affects their budgets!

They don't have to try to convince their scared child that what he is seeing in bed is really not spiders, but his head "playing a trick" on him.  After this has passed, they also don't have to remind their child that "there's no spiders there, you don't have to look for them" when they worry every night at bedtime.

They don't feel that their child's teacher is the only one who truly understands.

They've never had to go to "team meetings" to be told about everything that is wrong with their child.

They don't find out their child was teased and choked on the school bus for months, but didn't have the communication skills to tell them about it.

They didn't spend every night, over 2 years explaining that "blankets make you hot, sheets cool you down", because their child would tell them "mommy I'm so hot.  I need a blanket to make me cool".  Only within the last couple of months does he accept that it is how it works.

They don't have to deal with the utter frustration of medication side effects, having to chose between bad and worse, then have people judge them for medicating their child at all.

They don't have to explain the very same, simple thing to their child every day, only to watch him do it again and again.

They don't have play dates with other kids, where 100% of the time their child ends up hiding under a blanket on his bed  and crying because of the stress.

Their kids have, and can make friends.

They haven't been in the situation where they spend 2 hours re-phrasing, minimizing and simplifying something basic they are trying to explain, only for him to not understand at all without his speech therapist drawing a cartoon, and using a "thermometer" to finally get him to "sort of" get it.


Also - most importantly.  They don't get to have my Alexander.  Yes it's hard, and yes I get tired and frustrated, but I wouldn't trade him for anything or anyone. While other mothers of 7 year-olds deal with attitude and "I'm bored" and kids talking back, I still have my sweet and very innocent boy, and it always makes up for all the hard parts.  Just please don't compare what he deals with, with a funny, quirky television character!